My name is Caitlin Naldoza. I am 17 years old and was diagnosed with late onset Pompe Disease at 5 years old. I will be sharing my experience being a teenager living with Pompe and how it has affected me over the years.
In middle school, that was when I started using a mobilized wheelchair to get around. I remember the first week or so, it was hard for me because of the transition from being able to walk around my elementary school to having to use a wheelchair. The first day of school was emotional for me, I came home from school in tears because of the unfamiliarity of the school getting used to relying on a wheelchair — and I think generally middle school can be stressful for every teenager because it is a significant part of growing up. Going into middle school was terrifying, I hoped to find genuine friends because I didn’t want to be viewed ‘differently’ but more so of my personality. I was afraid of being stared at or judged whenever I was at school. I’ve always been a shy person so reaching out and talking to people made me scared and nervous. But I made it through and ended up making friends that I consider the best people to be around.
At the beginning of middle school, that was when I started seeing a psychologist. My biggest challenge that came with Pompe was more mentally than physically. I’ve always been a highly sensitive and introverted kid and didn’t necessarily have a good way of coping with my emotions along with talking about my feelings and hardships in life. For the longest time I’d backed out on social situations because I felt more comfortable being by myself than with a crowd of people. If I was at a family gathering or at school, I would keep to myself rather than insert myself in people’s conversations because I felt safer that way. With my depression, something that I constantly thought about is that no matter who you’re with, whether it’s your family, friends, classmates, etc. you can easily feel isolated and alone in the world and I just didn’t think I would be genuinely happy. I finally got exhausted from having my negative thoughts consume my everyday life, and wanted to start living life for myself and not for other people.
As a child living with Pompe, being in and out of doctor’s offices and hospitals, I’ve looked up to my team of doctors, The idea of being able to work hard through years of school to make a difference in a person’s life was inspiring, and I’ve always wanted to do the same for others when I got older. The past years in high school, I’ve been trying to understand myself and work through my emotions so I can accomplish this goal of mine and start making the most out of my life. I grew to appreciate my family, friends, and hobbies more often instead of continuously focusing on my personal differences. That was something I always try to work through with therapy, and I finally feel like I am at a part of my life where I am okay with feeling vulnerable and to accept that Pompe, anxiety, and depression are a part of my life.
With my senior year of high school about to start I’ve realized that after living with Pompe for over a decade I’ve valued the compassion and empathy I attained as I got older. With people I meet, I feel like I get a better understanding and a different perspective of people’s actions and feelings. I personally don’t think that I wouldn’t have this mindset if I didn’t have Pompe. To this day I always have to remind myself that there will be moments where I feel like ‘it’s the end of the world’ but I remind myself that I am in control of my life and that these intense feelings that I am having are only temporary.